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What Happened to Medicine?
I am dismayed at the medical treatment, or lack thereof, that I have received to date. I sent an online message to my PCP a few weeks ago that I was feeling hopeless and depressed as a result of my illness and asked if he thought increasing my antidepressant would be of help. He did not respond. I have to see him next week and will ask what the purpose of the online message system is if a patient cannot get a response from their doctor.
I understand that my condition(s) are complicated, after all it has taken 3 years to finally get an appointment with a liver specialist, even though I had been told one would never see me. I apologize if I sound like I am whining, perhaps I am simply frustrated at just how difficult it is to receive the appropriate medical treatment these days. I try to remain positive, active, engaged in creative activities and things of that nature. I am not curled up in a ball in some kind of catatonic state. All I want is help from my medical team, and it has become such a struggle to get the treatment I think I need. Yes, I have a friend who is a doctor and who has been very helpful by telling me what tests my PCP needs to order, and when I ask him to order such tests he does. but really, how crazy is that? This forum and my disease have enabled me to become more empowered, however I had no idea that getting the right treatment, if any, would be such a struggle. I have good coping skills, but in all honesty there are days when I really do feel like curling up in a ball, but I don't because I am afraid I would remain in that state. So instead I take walks, work on my artwork, bake bread for my neighbors, care for my 84 year old friend etc. I am constantly on the move. Right now, I just want to step off and rest.
Also, the last time I saw my PCP he asked me if I wanted a new doctor. No doctor has ever asked this question of me. I am now planning to choose a new PCP after my upcoming appointment with a hepatologist. I am seeing my PCP this week so he can go over with me the information he received from the hematologist regarding my immunoglobulin disorder.
Interestingly enough, I met with a neurologist this week for the second time. I could not have asked for a nicer physician! Perhaps there are still medical providers out there who still care about and want to help their patients.
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@cookierockwell, I do wish filing a grievance could alleviate the problem. Unfortunately, filing a grievance with Medicare is next to impossible these days of robot voice mail and press this number and press that number and no one is available to take your call. Heaven forbid a real person would be available to take your call. And leaving messages for return calls which never happen is a waste of time. Recently I spent nearly three days trying to get through to care providers on the phone to see what to do and because I am disabled with extremely limited access to public transportation I wound up going to the ER in an ambulance! It would have been much less expensive in the long run to fix a broken communication system and actually allow patients to contact care providers but then those monetary profits via insurance might be reduced - oh, no!
If it were just one doc or clinic or hospital to file a grievance against, it might be simpler to "move on" but the cover-your-rear-and-grab-those-insurance-dollars are more desirable goals in today's medical world than treating illness.
It's a systemic problem and I feel it cannot be resolved unless we reduce the profit motive to a more humane and appropriate level.
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5 ReactionsWow! You've shared what I JUST experienced last week with my (usually) charming, concerned and candor-inclined PCP...
- I brought my list of Qs (JUST like is mentioned in every pharmaceutical commercial - but I've always done this);
- Tried to answer his Qs for more info as expediently as possible (BUT I don't know how much he already recalls from my background as I know my history is not at the top of his mind);
- Get cut off at nearly each and every turn with snappier and snappier Qs to get to the point;
- I pleasantly insist for the umpteenth time that he/his office provide a referral to a doctor for more indepth psychological testing, to get some answers for lifelong struggles, OR, if not that, at least as a baseline;
- I share that I may begin to get upset, as I'm feeling push-back at every turn, and then the tears start flowing (this has never happened to me in a Dr's visit);
- And then he launches into how he can recommend seeing another doctor if I'm not happy...blah blah blah, and I said "we're OK, aren't we", and he said of himself "I am (but it's up to you)..."; and now I'm really feeling "pushed away"; and then, to further the feeling of futility and lack of connection...
- Get rushed out (after having previous nearly hour-long, chatty visits) due to a pre-op patient needing his presence (of course I understand this!).
To his credit, he offers that I can request a call-back from him and he'll do so after hours (in the evening or on the weekend) if I want to further discuss another one of my concerns: my mother's recent, first time 15-minutes of aphasia the day before...maybe meant to make up for some of this disconnected visit experience.
It's been a week ago, I travel 70 miles each way for appointments with this doctor, and I guess we both were in stressed states of mind.
I only wish he could have said he was under the gun, for his part, too - as he has in so many words, with a sense of humor, in past visits. At least acknowledging what he brought to his part of the visit would relieve some of my sense of ongoing failure in getting answers to, if not resolving, what I visit him for.
Best wishes going forward. The advice to 'make a list of Qs', 'ask your doctor for a referral', 'talk with your doctor about [blah, blah, blah]' is so just so many words, but not sound advice for getting to the bottom of things so you can move on/forward.
Welcome others to share similar experiences - at least then I/we might feel less futility (Sisyphean angst!) in these struggles.
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5 Reactions@frances007 - my long reply above was to this post - forgot to enter that into my message.
@cookierockwell - I agree: I sometimes think, and feel, that I'm the ONLY patient who reads what they give us as visit notes, etc. The first time I visited this doctor, they had that I was a "smoker" - NO! and you can bet this could affect my insurance rates, etc etc and so on. Not to mention other less significant 'facts' that were not true. And then they said - "Oh, that doesn't matter". Right!?
So many places, not just physicians' offices, insist you accept paperwork as is, and/or "just sign here", and yet if you (and you should!) read what they insist you "just sign", you may see that you're legally agreeing to be bound by terms that are just not accurate, true or misrepresent you.
This happens with any forms that we sign. Just try insisting that something was wrong after the fact, and then be told 'well, you signed this', and good luck with that. I must say, so far, this has not happened to me, but as an educator in business and law, amongst other subjects, I would always caution my students about this aspect of daily life.
And it hasn't changed in over twenty-plus years - in fact it's probably gotten far worse as the labor force is stretched thinner and thinner, and bottom lines are the driver over humanity and basic decency.
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4 Reactions@brandysparks I have been known to sign a form, adding "under protest" to the signature line. Boy, they didn't like that! The first time I did it, the front desk said if my signature wasn't on the form, the doctor couldn't see me. I also crossed out terms I didn't agree with, and initialed it. Wonder if that was part of the "DP" for difficult patient on my chart?!
We need to be our own advocates these days. Whether it is for general health, or specialists. Don't be reluctant to change to a different doctor even within the same practice, if you feel the need to. I did that about 2 years ago with one of my providers, and have been very happy. Yes, it was awkward to meet the old dr in the hallways, but we were both polite. Take your questions and concerns to each visit, ask to have information repeated if needed, ask for resources to further your understanding of a condition or medication.
Ginger
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4 Reactions@gingerw Thank you Ginger!
I definitely agree...guess the proverbial saying "no one said life would be easy" applies these days more than ever, no matter what the guidance [noise] continues to state.
Initialing your changes is something I've definitely done, and the wording of "under protest" is a good one, too, though - if those pushing the signatures - with all due respect - even notice it, they are likely to accept the form/s "under protest" too.
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3 ReactionsYou are all correct. "Doctoring" has really changed. Does anyone remember when you went to see the doctor, you had to get undressed and put on a gown. When the doctor came in he actually examined you. By touching and feeling areas, he could figure out what was going on with you. Now they barely listen to your heartbeat. They just look at the blood panel numbers. Then they try to guess what the problem is. You may as well go to a fortune teller. We have a horrible medical system in this country. People have fits if you mention socialized medicine, but what they don't realize is that it works. We have friends in Denmark and they get wonderful care. Yes, they pay high taxes, but they get a lot of services for their money. Here we pay taxes and get the bum's rush.
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6 Reactions@brandysparks, ITA that the bottom line is today's medical goal, along with CYA to prevent lawsuits. I happen to have a great PCP and an excellent nephrologist but the hospitalists at my local medical facility and the rest of the medical community here are abysmally ignorant and/or still practicing what I have coined as post-medieval "medicine."
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2 ReactionsNo! Socialized medicine would never work in this country. Look at the care in Canada, they have to wait for so long to even be seen that they are almost dead and then healthcare will offer to finish you.
USA is way too corrupt for socialized medicine or socialized anything to work well.
I had the most efficient, professional, and engaged PCP that I just hated to lose since we moved to another state last month. Yes, she was very rushed and multi-tasked items in my exam with me, as part of her conscientiousness was keeping all of her patients on their scheduled times all day. What worked for us is that I came with a sheet that listed my questions or concerns in an organized fashion, as much to the point as possible, and if lucky, there were only a few things. I tried to have a section of positive things since last visit, as they need to know we appreciate and recognize the good things too. I would give a copy of my list to the nurse, and when my doctor came in, she had a little heads up on what to cover. Most of the times, items on my list were already in hers. This heads up gave her an opportunity to address everything without a lot of redundancy so we could review as smartly as possible during our allotted time. It means I had to learn to be brief and talk fast, but I learned quickly that this doctor did indeed listen and absorb what I said. I didn’t need to repeat myself with her, and we certainly didn’t have time for that. She has shared our successful doctor/patient business model with others as a way of dealing with how the medical “business” is so constrained now. I never left her office dissatisfied, and usually had all lab orders or referral plan before I checked out at the desk.
It doesn’t work with all doctors. I handed my Neurologist a small list of what I wanted to discuss on our 6 month visit, and he handed it right back to me. I always left his office with unfinished business and just another appointment for my next 6 month “check-in”. I now have a new group of doctors I have to get established with in my new home state, but I know one thing I cannot change: I’ll have only so much time allotted for my visit, and there will be another patient behind me expecting to be seen on time like we hoped to be seen at our scheduled time. I hate it when they’re late for me and I feel I have to donate minutes of my scheduled time so they can catch up. But I honestly do feel good giving them minutes back in a visit when things are going well so a needier patient can benefit. But I know when I meet my new care providers, I’m going to have my list ready to hopefully help both of us feel satisfied my visit was successful and on schedule.
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